Keeping Track of My Father's Exit. By Alan G. Ampolsk

The Story So Far

I'm a writer, photographer, consultant. Age 51. My father was a reporter and editor. Then he became something other than that. He died February 8, 2010 at 87. He was widowed in 2003. His decline started a little earlier. His sister died of Alzheimer's.

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Policy

Actually just the start of the adventure - the policy forum was the beginning of a process, not the whole thing.

But it was a good beginning. I was impressed. I tried not to be. Not for any specific reason - I always try not to be impressed, as a matter of principle. I like to stress-test new things, and I don't want to get worked up about them just because they're new, or because they're designed to work you up. But in this case the program was extremely well done and of course, there are the merits of the cause itself. So by the end of it I was more than willing to get energized and pick up a rifle or shovel or whatever metaphoric implement you like and go fight.

In more detail: first of all, it was good (and strange and overwhelming) to find myself all of a sudden in a large group of caregivers. I don't know about you, but for me, apart from my own small professional caregiving establishment and the comments that some of you post on the blog, I live my Alzheimer's life in complete isolation. I knew intellectually that there were plenty of others dealing with it but seeing so many of them in one room brought me up short - in a good way. It was helpful to know in a really tangible way that I'm not alone. I hope that reading the blog has some of the same effect on you and does you a little good. But if you ever have the chance to get together with 500-odd people who know the territory, take advantage.

The conversations with other caregivers had a quality I've come to recognize (and I probably display it myself - you be the judge). For want of a better term, let's call it the pressure to confess. When you start talking to fellow-travelers they tend to tell you a lot - maybe too much - very quickly, with an intense, compulsive, nervous quality, as though they're watching themselves talking and they're slightly amazed at the loss of control and at what's coming out of them. I know myself that often I don't intend to go on at such length, but the need to get it out of your system is bigger than you are and it takes over, and you stand back and let it happen. It's like lancing a boil - or in this case, given the numbers, like attending an ancient mariners' convention. At the same time there's the enormous relief that comes with finding out - like I was saying - that you're in good company.

The formal program was well done but at any event like this what's most useful, and what interests me most, is what happens around and behind and underneath the formal program - all the connections and the side conversations and the chance to humanize the experience. That was helpful.

It was also educational. One of the big problems with living in isolation is you tend to start thinking of your world as the whole world, and it isn't. For example - I've never had anything to do with early-onset Alzheimer's but here were dozens of people - caregivers and also patients - who're dealing with it. There was one guy who told me a horrifying story about trying to get his wife into a dementia unit, as opposed to a locked ward, and failing, because she was under 60 and the dementia unit was reserved for people over 60. He finally had to sign her out and re-admit her through the ER where, apparently, the staff was more flexible. On a policy level the association has built a whole initiative around the need to waive the two-year Medicare waiting period for people with early onset disease, so they don't get caught without insurance between the time they lose their jobs and the time they're eligible for Medicare disability coverage. My life is caught up in Medicaid issues and I never knew the Medicare problem existed. There's a variant form of crisis here for just about everyone.

As to the formal program itself - it had the events you'd expect (research reports, a candlelight vigil) but consisted mainly of preparation for a full day of visits to Congressional offices to press for three specific reforms - the Medicare waiver and two others that I'll mention later. The process is tightly scripted, as it'd have to be when you're deploying 500 people who aren't professional lobbyists or communicators. So there were three well-defined policy "asks" to be presented to lawmakers - an increase in NIH funding for Alzheimer's research (a make-whole after five years of flat funding), the creation of an Alzheimer's project office to coordinate response across multiple agencies, and the Medicare waiver I've already mentioned. Armed with facts and talking points (and wearing purple sashes so we'd stand out - it was a little circus-like but costumes are a mass-lobbying convention on the Hill), we were bussed off to the hill for a series of small-group meetings with Congressional staff - and in some cases, with the representatives themselves.

What was noteworthy here for me at least was the seriousness of the discussions. Like most people, I usually get my sense of Congress by watching it on television. And like most everything on television, the picture you get of congress at work is highly distorted. Yes, in real life, too, congress has its cartoon aspects - destructive politics, faux populism, the influence of entrenched interests, and silly destructive posturing, especially at hearings. But what you don't get on television is the realization that there are also a lot of people there working hard and trying to get things right. Examples: my own representative, Chris Van Hollen, asking some sharp, well informed questions in our small group meeting; a senior Rangel aide pushing back on the New York advocates, in a good way, trying to help them strengthen their political argument; some of the senators at the Senate Special Committee on Aging hearing (Susan Collins in particular) who seemed really to be listening and really to be thinking about the testimony. I'm sure the biggest policy value created through a mass event like this is a show of force, and the real work gets done in smaller, more professional groups behind the scenes. But for a turn-out-the-numbers event, there was a good deal of substance. Plus there's the value that in politics, numbers count, or so I've heard.

Still more substance: the focus of the Senate committee hearing was the presentation of the Alzheimer's Study Group report. This is recommended reading - an exceptionally clear, forceful statement about Alzheimer's as a public health crisis, along with a set of policy recommendations (including the project office I talked about above, and others that parallel a couple of my own thoughts). If you're interested you can watch a replay of the hearing here. Among several good presenters, Newt Gingrich stood out. A while ago I worked for a firm where he was a senior advisor, and he spoke at a conference I organized. He struck me then as an exceptionally smart person, able to synthesize a lot of information from multiple disciplines and then get to a far-reaching solution. At the hearing he struck me the same way. His politics aren't mine but I'm not going to let that get in the way. The last thing we need on this territory is partisanship.

Criticisms? Of course. I'm a communications person and communications people are opinionated - if they're not, they're not any good to anyone. My opinion in this case is that - overall, and certainly in the meetings and hearings - I would have liked to see less sadness and more anger. If the Alzheimer's community is going to get politicized - and it needs to be - then it might go farther faster if could capture and express a real sense of injustice. That's not hard to get at - you deal with Alzheimer's on the ground and you wrestle with the system and at some point you realize that the picture is all wrong, healthcare delivery is profoundly screwed up and it needs to be torn apart and rebuilt. There's no shortage of people in the caregiver community who feel that way. But it's harder for big groups like the Alzheimer's Association to move in that direction. The association has its roots in community support groups and as a result it has a bias toward sympathy, compassion and hands-on assistance. Those are very good values and very good results, but if you want to start a movement, you need a different sensibility. Healthcare movements that achieved political success - HIV/AIDS and breast cancer come to mind - got their start in political activism. Before HIV advocacy there was the gay rights movement, and before there was breast cancer advocacy there was the women's movement. Alzheimer's doesn't have a natural parallel - except maybe in the Gray Panthers, and they're not the force they used to be. So politicizing Alzheimer's will take effort. It might be easier and more effective for a third-party group to channel the anger and leave the association free to do the caregiving and the research funding and the general visibility for the disease. I'm sure these things are discussed and debated internally, and as an outsider I may be behind the curve. Or I may be completely wrong for reasons that would be obvious to me if I had an insider's perspective. It's a lot easier to critique than to do the work. But for the moment I'm willing to push for an activist agenda and see where that goes.

As to how to get involved in advocacy - and some of you have asked about this - the easy answer is that the association will do another policy conference next year. The better answer is that you can start sooner - right now - by contacting your local chapter. The association is chapter-driven - the national organization sets priorities and direction but many of the initiatives start at the local level, and if you want to influence policy, the chapters are the place to start. Many Alzheimer's issues play out at the state and local level. If you have national policy aspirations - and in a year of healthcare reform, you might - keep in mind that the chapters are in contact with local congressional offices. So if you start now, you stand a chance of getting to next year's conference as a veteran rather than a newbie, which is what I was (and still am).

Additional policy updates will follow - I think I'm going to settle in and try to be an advocate. But there's still the problem on the ground - also known as my father. Updates about him next time.

I'm not sure what to expect, but I'll report. I'd thought of liveblogging tomorrow's all-day session, but I'm not certain I'll be able to blog and listen at the same time (cf. walking and chewing gum), so a summary after the fact is most likely. On Wednesday we get thrown into congressional offices - a mass advocacy thing, I suppose. Should be lively.

After that, back to my personal frontiers - a New York trip on Thursday this week to see, as usual, what's changed.